Kidney Transplant 35 yrs Dec 2018

[Andysue]

I’ve been taking Aza my whole transplant life. I currently have a 15cm cyst on my liver. Does anyone know what I may be facing at this stage of my journey? Any stories or advice anyone could share, words of encouragement if any would be delightful.

[Hidden]

Good afternoon.

Hopefully you will be referred to a liver specialist for further review with regard to the cyst - you may require further scans depending on what you have already had so that the exact nature of the cyst can be determined. Treatment options (if treatment is required) are likely to depend on whether you are experiencing symptoms from the cyst eg pain, where exactly in the liver the cyst is and what your general state of health is. There is a publication on the Trust website with regard to benign tumours, which is hopefully what it is, but you may want to wait until you have a bit more information about the cyst so that you access the relevant information.

regards

[Andysue in reply to Hidden]

Thank you for your reply. It is benign. Blood work proved no cancer Ca119 & 2 others. Have you ever heard of “unroofing” I believe is the word?

I’m just afraid it’s the whole left lobe & most of the right that has to be removed. Which is what my Gastroentrologist had indicated.

[Hidden in reply to Andysue]

I am glad to hear that it is definitely benign. There is something called 'deroofing' which basically causes the cyst to collapse down. It would be good if you could avoid a major resection of your liver if at all possible...

regards

[Hidden in reply to Andysue]

Also - it should be a hepatobiliary surgeon who would review scans and you to see what would be appropriate surgically

[Andysue in reply to Hidden]

Thank you

[Isabelle2]

Sorry I can’t add anything but wow 35 years. It’s amazing. I had one a little over a year ago. . You are a legend!

[Andysue in reply to Isabelle2]

Becoming a legend - not quite. Just last There was a 5??? Year transplant person who passed away. I research now and again just to see.

I’m very blessed - and even more proud to say my kidney came from my very generous sister. She has now passed as well (Marc of 2017). We were Birthday babies. I was born on her birthday (4 years apart). Shared birthdays & now forever share apart of her.

Now gotta go do some research.

[carole-shaw in reply to Andysue]

Did u have cysts on your kidneys as well before the transplant. I had kidney transplant 9 years ago also from my sister due to polycystic kidney disease I also have polycystic liver now on the transplant list for liver. My disease is hereditary. Hope u get sorted out soon

[Andysue in reply to carole-shaw]

No ma’am, I did not have cyst on my kidneys. Lupus was the culprit of my kidney failure.

The cyst on the liver, from my understanding, is due to long term use of Imuran of which I have to take in order to keep the transplanted kidney from rejecting.

Prayers for you!!